Including Black, Indigenous and Latinx communities as partners in the planning and implementation of Long COVID-19 responses: recommendations for enhancing health equity

By Michelle Medeiros, Hillary Edwards, Claudia Baquet.

COVID-19 data, where are the holes and what does this mean for Long COVID?

As the SARS-CoV-2 (COVID-19) pandemic progresses, the impact of persistent, long-term respiratory, functional, and psychological comorbidities becomes more evident in the general population, and particularly within Black, Indigenous and Latinx communities. Black, Indigenous, and Latinx communities have a higher prevalence of comorbid conditions such as hypertension, cardiovascular disease, diabetes, obesity, and asthma, which increases the risk of contracting severe COVID-19, which may lead to delays in recovery, prolonged symptoms, increased hospitalizations, and increased mortality.

Scientists are only beginning to understand the long-term clinical effects of COVID-19, known as Post-Acute Sequelae of SARS CoV-2 infection (PASC) or “Long COVID”. While current data suggest that PASC severity is related to increased age and pre-existing conditions, evidence is still limited on how to address inequities in PASC outcomes regarding material resource deprivation caused by low socio-economic status, chronic stress brought on by racial/ethnic discrimination, or place-based risk.

Inequities have been seen from all sides of pandemic prevention and response. A lackluster approach to diversity, equity and inclusion has led to continuous disparities in COVID-19 testing, health care access and research. For example, the lack of complete data for cases, deaths, and vaccine uptake by race and ethnicity complicates the ability to understand etiology and factors associated with mitigation of Long COVID in the United States. In addition, lack of diversity and inclusion in early mRNA vaccine trials impacts trust, trustworthiness and uptake of research results in Black, Indigenous and Latinx populations: Pfizer’s early reporting on participation rates of Black and Latinx individuals was 10% and 13%, respectively.  Participation of Black and Latinx children in vaccine trials was significantly lower than for adults. How can we further current work in Long COVID-19 health equity to ensure Black, Indigenous and Latinx communities do not suffer even more with PASC?

Recommendations for Inclusive Planning and Implementation

U.S. President Biden signed an executive order on January 21, 2021, entitled, “Ensuring an Equitable Pandemic Response and Recovery”, outlining measures to be taken to “remedy differences in COVID-19 care and outcomes within communities of color and other underserved populations,” including the creation of the COVID-19 Health Equity Task Force. In October 2021, the Task Force published two documents that provide cohesive recommendations for equitable resource allocation: “Final Report and Proposed Implementation Plan” and “Accountability Framework”. The Framework provides recommendations for approaching Long COVID healthcare and research in a manner that promotes equity, which includes setting a national research agenda on health equity and COVID-19, understanding the impact of health care provider bias and discrimination, supporting insurance coverage and treatment, particularly at PASC care centers, and “executing a robust communications campaign and information resource center to educate the public on PASC in ways that are culturally and linguistically appropriate and accessible”.

Another key consideration for inclusive planning is to include researchers and team members who are representative and inclusive of Black, Indigenous, and Latinx communities to begin to break down historic cultural barriers.  The negative effects of the under-representation of Black, Indigenous, and Latinx scientists in the scientific workplace are a critical limitation for research across the research continuum and is a well-established focus of systematic initiatives, programmatic and policy changes at the U.S. National Institutes of Health (NIH). Contributions from Black, Indigenous, and Latinx scientists increase innovation and science quality and advance medicine and public health. The contributions of investigators with diverse cultural perspectives enhance research, assist in systemic bias mitigation activities, and support diversity and inclusion of diverse and underserved communities, who continue to be underrepresented in clinical trials and in research in general.

Designing PASC research on interventions and mitigation strategies in a manner that meets patients “where they are”- physically and mentally, can take significant effort. Nonetheless, learning how to incorporate those interventions into clinical models of care advances health equity. Recommendations from the COVID-19 Health Equity Task Force echo voices from communities of color and stakeholders historically left behind in research and resource allocation. As PASC research continues to evolve, instead of the traditional approach of doing research “on” Black, Indigenous, and Latinx communities, researchers need to make a concerted effort to conduct research “with” the community.  Before making the ask, researchers should be willing to meet community members ‘where they are’, contribute in meaningful ways to the community and demonstrate active listening. Approaching research as a partnership to be conducted with communities of color begins to open the doors of collaboration. As researchers actively demonstrate a careful and transparent approach to engagement, communities of color may begin to embrace research during acute periods of distress such as a pandemic, and establish more sustainable solutions for advancing health equity overall.


Paper title: Research in the USA on COVID-19s long-term effects: measures needed to ensure black, indigenous and Latinx communities are not left behind

Author(s): Michelle Medeiros1, Hillary Anne Edwards1, Claudia Rose Baquet1,2


1Department of Pharmaceutical Health Services Research, University of Maryland Baltimore, Baltimore 21201, MD, USA.

2HOPE Institute LLC, Columbia, MD, USA.

Competing interests: None

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